Benjamin was just 27 hours old when we lost him. Perhaps the strangest part of our story is that we knew he was going to die before he was even born. Benjamin was diagnosed with Patau Syndrome when I was 22 weeks pregnant - a syndrome simply not compatible with life. My hope is that my blog may bring comfort to someone who has lost a child or help someone who might be faced with a difficult decision like we were. Here is the story of my beautiful little man...

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Monday, 17 January 2011

Benjamin's Arrival

As the pending arrival of the baby drew closer, I became more and more anxious. Part of me wanted to never go into labour because I knew exactly what was ahead. The other part of me wanted it to happen so that I could begin to move on from this nightmare.

Benjamin went 4 days over his due date and when we arrived at the hospital, the Midwive told me that they'd been expecting me for some time. I don't think they thought that Benjamin would make it this far. The Midwife was right, Mother Nature was extremely kind and Benjamin was born very quickly with just gas and air. Under normal circumstances, I guess it was the kind of delivery any woman could wish for.

When Benjamin was born, he didn't make a sound. There was no miracle like my parents had hoped for, it was exactly as the Doctors had said. They handed me our beautiful baby boy and Lee and I just cried. He may not have been physically perfect but to us, he was perfect in every way. I had never doubted that we had done the right thing but at that instant, I knew that we had given our beautiful baby a chance. Although his time on this earth was short, it was priceless and precious time. Benjamin met his Mummy and Daddy, his big Sister, his Grandparents and his Uncle Stuart. Our little boy has a name, an identity and a family that he got to meet and be loved by.

Meeting Mummy & Daddy x

My Mummy & Me x

Meeting my Big Sister & Making Memories x

The next 27 hours were like nothing I've ever experienced or want to experience ever again. All we did was cuddle our beautiful son Throughout the course of the 27 hours, Benjamin kept having breathing apnoeas. When he had the first one, we thought we'd lost him. It was the worst feeling ever. He would stop breathing completely and then what seemed like an age later, but was probably only seconds, he would gasp and start breathing again. We became accustomed to this eventually as it became quite a regular occurence but each time it happened we seemed to hold our own breaths in the anticipation that he wasn't going to start breathing again. Our beautiful little boy opened his eyes and looked at us. It was amazing to see him looking into our eyes and it helped to ease our pain. I know that he knew he was loved.

After about 4 hours, the Doctors decided that we needed to feed Benjamin. As he had a cleft lip and palate, I wasn't able to feed him myself and he couldn't have a special feeding bottle either, so we had to take him up to the Special Care Baby Unit where he had a feeding tube inserted. We went up with him - we were too scared that something might happen if we left him for even a minute. The Doctors decided to administer morphine just to ensure he wasn't in any pain - he wasn't showing any signs of discomfort but I guess they wanted to act on the side of caution just in case.

The hours that followed were just spent cuddling and loving our little boy. We got to do some of the normal things that new parents do - we changed his nappy and dressed him. We took some photos and did some camcordering and tried to make some memories in the short time that we had. It was hard to smile for the family photo but I knew that in the months and years to come, I wouldn't always feel as desperately sad as I did at that moment and it was important to have something to look back at.

Benajmin kept going and at one point, we even talked to the Doctors about the posibility of taking him home. I think it was just wishful thinking on our part if I'm honest but the longer he kept going, the more I think we thought he may defy the odds and keep going for weeks. In hindsight, we were probably crazy to even think it but I guess we just wanted to take our baby home like any other normal couple.

In the early hours of the morning on the 22nd of July 2009, our beautiful baby boy passed away peacefully as we cradled him in our arms.

14 comments:

Hi nicolaYour blog is beautiful! I lost my little boy in 2001 to Edwards Syndrome, which as you will know is very similar to Patau's syndrome. Benjamin is gorgeous, I'm so sorry you had to lose him, its too cruel. I wonder if you can tell me where you got your ROCK from? Its beautiful. I volunteer for SOFT UK and I think lots of people would be interested in something like this.LoveDemiMummy to ickle angel Connor Adam 13.06.01

Hi DemiThanks for your lovely message. I'm so sorry to hear that you have had to suffer the loss of your little boy too. As you know too well, it's the worst thing a mother can ever experience. It's true that time does heal but it never takes away that emptiness of being without your child. For me, focusing on the positives helps me to feel closer to Benjamin and to keep his memory alive. As you're a volunteer for SOFT, I'm guessing it's the same for you? The stone is lovely isn't it? I found the supplier on ebay, the web address is http://stoodleyjonesworkshop.com/page2.htm. I can highly recommend them. The service was very personal and the stone is absolutely beautiful. Hope to talk to you again at some point in the future, much love, Nicola xxxx

Hi Nicola,Your little boy is gorgeous, thank you for sharing him. I was particularly moved by your words as our stories are so similar. My little girl Hope was born in March 2010 after a prenatal diagnosis of trisomy 13 at 24 weeks. She also had a bilateral cleft. She lived for 3 wonderful days full of cuddles and memories.

I too have a rainbow baby called Matthew! He is just two months old now and Hope also has an older sister, Ella who is now 3 and a half yrs old.

I am friends with lots of SOFT mummies on facebook (including Demi above and Jenny from SOFT) and they have been a huge support as I was blessed to find them when Hope was first diagnosed. We are all looking forward to the SOFT family weekend in May in Northampton! It would be lovely to talk to you more if you would like to.

Lovely to see your handsome boy and see so much of what I felt/feel written down.Jo xxx

He is beautiful and perfect in every way God has intended him to be irregardless of his differences. So perfect that God needs to take little Ben home earlier than expected. Thank you for sharing. God bless your family.

I don't have the words, but I am sitting here sobbing for you. I'm so sorry for your loss and think that what you did when you gave Benjamin his right to his own little life is beyond heroic. I can't think of an act of more pure love. Thank you for sharing.

Thank you for sharing this - every parent's worst nightmare - in such a beautiful and moving way. What a beautiful little boy he was, and so blessed to have you both as his parents. I've had a difficult day with my toddler daughter and my 10 week old son and I've just been upstairs with tears in my eyes to give both of them a tight cuddle as they sleep and remind myself how unbelievably precious they are to me.

i had tears in my eyes whilst reading, such a moving blog. I have to admit, i hadn't heard of his condition until i read your blog and i think it's great that you've decided to share this in hope to help other people. Your boy is beautiful, as are all your photos, you must be so proud of him, and i'm sure he's incredibly proud of you, dont ever doubt that for a second! Thank you for sharing your boy. Sending all my love to you and your family x

I read your blog an hour ago and I am still crying. What a beautiful and moving account of your precious time. I cannot begin to imagine ur pain but it has made me realise just that wee bit more how precious our children are. Thank you for sharing x

Your little boy is beautiful and like so many other mummy's here, thank you for sharing him. You are an inspiration which just goes to prove what a purpose your little boy had. He little life story has had such an impact. I wish you and your family all the love in the world. X

wow,the way you have presented your story is very touching. Your little boy is absolutely beautiful! thankyou for sharing your story, i'm sure it's helping so many people out there who have been through or are goin through a similar situation. sincere condolence X

im sorry for your lost..before i read this blog,my boyfriend just tell me the quotes that u write..i know what its means.."An Angel opened the book of life to record a baby's birth, and whispered as she closed the book "too beautiful for earth".by that time my tears like going down..i try to control my self..but now when i see his face and your story i cant stop my tears down..wish Benjamin happy up there..

I stumbled upon your blog when looking up quotes for mine. I'm so sorry for your loss of your beautiful baby boy. I too lost my son Nolan on March 30, 2012. He was stillborn at 34 weeks. I also started a blog after his passing as a way of working through my pain.